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Celiac Serology question


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Hey, looking for some input here (providing sources gets extra points!!).

Basically, I was helping cover some of the FM and UC clinics for my hospital during the early phases of this covid nonsense.  I had a patient whose father recently tested positive for celiac (confirmed with upper GI biopsies).  He was requesting the celiac genetic test as recommended.  His results came back positive, but during this whole process he lost his job and now doesn't have health insurance so referring to GI isn't exactly an option right now.

The question: if he is not having any symptoms, is he still ok to continue eating gluten? He is not having any obvious symptoms of celiac, but with the positive test of course he is at risk and with his father, it's my understanding he is considered high risk. With no symptoms would GI even do an upper GI for biopsies?  Is it recommended for him to begin avoiding gluten NOW as he is high risk to develop celiac in the future, and continuing to eat gluten increases risk of small bowel cancer if celiac starts?

Thanks...didn't find much on UpToDate regarding this situation, and now that I'm back to ortho fully so I don't see the GI specialists ever to just quickly ask.

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Hey, looking for some input here (providing sources gets extra points!!).

Basically, I was helping cover some of the FM and UC clinics for my hospital during the early phases of this covid nonsense.  I had a patient whose father recently tested positive for celiac (confirmed with upper GI biopsies).  He was requesting the celiac genetic test as recommended.  His results came back positive, but during this whole process he lost his job and now doesn't have health insurance so referring to GI isn't exactly an option right now.

The question: if he is not having any symptoms, is he still ok to continue eating gluten? He is not having any obvious symptoms of celiac, but with the positive test of course he is at risk and with his father, it's my understanding he is considered high risk. With no symptoms would GI even do an upper GI for biopsies?  Is it recommended for him to begin avoiding gluten NOW as he is high risk to develop celiac in the future, and continuing to eat gluten increases risk of small bowel cancer if celiac starts?

Thanks...didn't find much on UpToDate regarding this situation, and now that I'm back to ortho fully so I don't see the GI specialists ever to just quickly ask.

 

I was in GI...

 

So if the pt has no sxs I would reassure him. The genetic test (as I'm sure u know) doesn't mean the pt will have it. If he is asymptomatic I would just have him observe.

 

I wouldn't scope him unless he has sxs. If he has GERD hx maybe (and I would use the GERD sxs to justify the EGD only) and do a duodenal bx with the EGD. You can do serologies WHILE THE PT IS CONSUMING GLUTEN (very important) but I would only order this if he is symptomatic or is really wanting to know.

 

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1 hour ago, Joelseff said:

I was in GI...

 

So if the pt has no sxs I would reassure him. The genetic test (as I'm sure u know) doesn't mean the pt will have it. If he is asymptomatic I would just have him observe.

 

I wouldn't scope him unless he has sxs. If he has GERD hx maybe (and I would use the GERD sxs to justify the EGD only) and do a duodenal bx with the EGD. You can do serologies WHILE THE PT IS CONSUMING GLUTEN (very important) but I would only order this if he is symptomatic or is really wanting to know.

Thanks, this is what I kind of figured, but couldn't find anything concrete.

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7 hours ago, mgriffiths said:

Hey, looking for some input here (providing sources gets extra points!!).

Basically, I was helping cover some of the FM and UC clinics for my hospital during the early phases of this covid nonsense.  I had a patient whose father recently tested positive for celiac (confirmed with upper GI biopsies).  He was requesting the celiac genetic test as recommended.  His results came back positive, but during this whole process he lost his job and now doesn't have health insurance so referring to GI isn't exactly an option right now.

The question: if he is not having any symptoms, is he still ok to continue eating gluten? He is not having any obvious symptoms of celiac, but with the positive test of course he is at risk and with his father, it's my understanding he is considered high risk. With no symptoms would GI even do an upper GI for biopsies?  Is it recommended for him to begin avoiding gluten NOW as he is high risk to develop celiac in the future, and continuing to eat gluten increases risk of small bowel cancer if celiac starts?

Thanks...didn't find much on UpToDate regarding this situation, and now that I'm back to ortho fully so I don't see the GI specialists ever to just quickly ask.

They would biopsy if they see suspicious villous architecture in the duodenal bulb. It can be very obvious with active celiac disease. More so likely if he had symptoms. Negative serology does not rule out. Negative HLA testing does. Problem with positive HLA testing is it doesn’t necessarily rule in the disease if it comes back positive. Also depends on DQ2, DQ8 positivity, etc. If you have likely positive pathology, negative serology, and positive HLA you’re left with readdressing the appearance of the villous structure and path. Can always repeat serology on gluten free diet and trend the response. Most of all, is he anemic? Likely not celiac if no. Basically it sounds like you’re left with non-celiac enteropathy. If a gluten free diet improves his symptoms, I would refer to a dietician. If he has no symptoms, is not anemic, while eating gluten he’s likely not a true positive. Difficult Dx to make for sure. Celiac does increase risk for small bowel lymphoma and small bowel cancers, correct. If you sent this to GI they would likely repeat serology, do HLA testing if in possession of pathology and most of all refer to a dietician. 

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They would biopsy if they see a villous architecture in the duodenal bulb. More so likely if he had symptoms. Negative serology does not rule out. Negative HLA testing does. Problem with positive HLA testing is it doesn’t necessarily rule in the disease. If you have likely positive pathology, negative serology, and positive HLA you’re left with readdressing the appearance of the villous structure and path. Can always repeat serology on or off gluten free diets and trend the response. Most of all, is he anemic? Likely not celiac if no. Basically it sounds like you’re left with non-celiac enteropathy. If a gluten free diet improves his symptoms, I would refer to a dietician. If he has no symptoms, is not anemic, while eating gluten he’s likely not a true positive. Difficult Dx to make for sure. 

Pt is asymptomatic...

 

But if pt was symptomatic that's a good point about anemia. If OP is drawing blood add a CBC.

 

The algo for celiac though is usually in symptomatic pts: +TTGA Serology---> DAGL/EMA if positive --->Duodenal TX Bx if pos ---> Dx:Celiac.

 

If the TTGA was low or negative can do HLA testing since 10% can present with Neg TTGA

 

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1 minute ago, Joelseff said:

Pt is asymptomatic...

But if ot was symptomatic that's a good point about anemia. If OP is drawing blood add a CBC.

The algo is usually in symptomatic pts: +TTGA Serology---> DAGL/EMA if positive --->Duodenal TX Bx if pos ---> Dx:Celiac.

If the TTGA was low or negative can do HLA testing since 10% can present with Neg TTGA

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You messed up all of my edits haha. Wouldn’t it be nice if we could follow algo’s without a doc messing it up somehow with different interpretations? All I will say is, this not an easy diagnosis to hand out. Very life changing/altering, etc. 

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You messed up all of my edits haha. Wouldn’t it be nice if we could follow algo’s without a doc messing it up somehow with different interpretations? All I will say is, this not an easy diagnosis to hand out. Very life changing/altering, etc. 

[emoji23] Mah bad! It's a tough DX but really true Celiac vs Gluten sensitivity is relatively rare (about 1/100 or 1%) but most of my pts with IBS sxs swear they have celiac despite negative testing. They may have gluten sensitivity so I just suggest elimination diet... Funny most of them after a week or two on the diet no longer have a "gluten sensitivity" and go back to their normal diets [emoji23] (BTW I live in the bay area very near Berkeley where everyone is convinced theyre gluten intolerant)

 

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